Thursday, September 29, 2011

77 DAYS

Peyton is 11 weeks old today.  This is a such a bittersweet thing for me.  Yes, I’m glad that she’s getting older, growing stronger, and most importantly getting healthier, but it still makes me sad thinking about how she’s been stuck in this room for 77 days now. 

Although I’m trying to stay positive, I’m getting really frustrated.  I spoke with her team of doctors yesterday and they told me that the possibility of her having to be here for another month MAYBE TWO is not out of the question!!  Her getting discharged all depends on how her body adjusts to the feeds.

They started feeding her this Monday and are increasing the amount VERY slowly.  Right now they are only feeding her via a nasogastric tube (also called an ng tube)- which is a tube inserted into her nose and goes down to her stomach. She is being fed this way so they can give her a continuous feed of a very small amount of breast milk to just coat her intestines and see how her body processes the food.  They started with 1ml going through the tube every hour for the first two days, yesterday they increased it to 2ml, and today they increased it to 3ml.  They even talked about letting her get a bottle tomorrow along with the ng tube feedings.  Thankfully so far her body seems to be handling the feedings well, but we will see what happens as they increase the amount.

Here are some pictures of her pre and post surgeries.

This picture is the day before they rushed her in for emergency exploratory surgery to find out what was going on with her belly. Not only is her belly completely distended, but the look of agony on her face is heartbreaking…I can’t even imagine how much pain she was in!
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This is a picture of her ileostomy, The red circle on her belly is her actual intestine connected to the outside of her stomach. The other half is under the gauze.
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This is what her belly now looks like-8 days after her reconnection surgery. They said the scar will get much thinner as it heals. The tube on her upper chest is her broviac. This is currently how all the nutrients she needs is getting into her body.
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and here’s some fun ones I took of us today while we were bored…
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3 comments:

  1. You have an army of people out here thinking and praying for you guys!!! She has such a strong little spirit...I will continue praying that the increase in feeds go as well as everything else has been! Keep up the good work, Peyton!!

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  2. You and your family are in my prayers daily. Peyton looks like she's getting better :) She has to be one of the most adorable babies i've ever seen. I hope she continues to get stronger and can come home with your family soon. You have suck a fighter!!! Tons of Love your way <3

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  3. Intestinal healing after a resection takes so long and it is so frustrating! It is a constant road of ups and downs. Sending positive thoughts your way in hopes you are all home as a family soon! It is great they are going to try and allow her oral feeds. Just make sure they don't continually keep her tube feed with no oral feeding down the road to avoid oral aversion! One less thing to deal with as she gets older. I had a nurse talk to me about that when Ben spent his first 5 months in the hospital after his resection. She had seen that happen with some children who had bowel resections. I am so glad I stuck to my guns! He loves food and
    has no issues with eating.You are doing a great job with Peyton! Keep on fighting the good fight and try to stay sane in the hospital! Hugs, Kati Pannecouck

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